Priority 24 from the Rare Musculoskeletal Diseases in Adulthood PSP

UNCERTAINTY: Would specialist services result in better care for people with rare metabolic bone disorders? (JLA PSP Priority 24)
Overall ranking 24
JLA question ID 0076/24
Explanatory note Not available for this PSP
Evidence

None identified
Health Research Classification System category Musculoskeletal
Extra information provided by this PSP
Original uncertainty examples Why have we not designated specialist centres as clear referral routes for patients with these rare diseases? ~ Are there specialist facilities available for older patients with my condition? ~ Adults with OI still need regular check ups and this would be best placed in a centre of excellence, on a whole day to avoid multiple appointments requiring time away from work etc, why is this not done? 
Submitted by Individual survey submissions categorised by Health or Social Care Professionals, Organisations representing people with rare musculoskeletal diseases, people with rare musculoskeletal diseases, relatives/carers/friends, Other.  For full details of the type of submitter for each individual question, please see the spreadsheet of data held on the JLA website.
PSP information
PSP unique ID 0076
PSP name Rare Musculoskeletal Diseases in Adulthood
Total number of uncertainties identified by this PSP. 39  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 18 June 2018